7.3.18

Living With Chronic Pain...

Over the Christmas period and more recently, because of the freezing cold weather, my chronic pain (Fibromyalgia) and chronic fatigue (CFS) were off the charts. I struggled SO badly and it really, really affected me physically as well as mentally. In order for me to preserve any energy/sanity, I kept myself to myself for a lot of the time. I had to leave my brother's house on Christmas Day to crawl into bed as the pain was so bad. I had to spend Boxing Day by myself instead of going to Winter Wonderland with my family and I spent the days after Christmas up until New Year's Eve, on my own.

Who else hides themselves away when their chronic pain or mental health is in pieces? I find that when it's all too much for me; I recoil and shut myself in. The reasons for me doing this are varied, but mostly it's so that I feel less of a burden on those I'm with. I get fed up of lying and saying I'm fine when really I'm not. It is easier not having to explain myself/my pain. I know if family members or friends were to read this they would tell me not to be so silly, BUT it's something you have to battle with when you have chronic pain or a disability and no one can take those sorts of feelings away sadly.

Whilst I was on my own and lying in bed I made a list. I compiled a list of just some of the thoughts I have about living with chronic pain. This is a list of what I personally feel chronic pain does to me. It's a list of what chronic pain does to my brain as well as my body.

I try my hardest to not let my chronic pain define me BUT it's damn hard. It's not all doom and gloom, I generally have a fantastic life with friends and family who love me but...

For me, this is what living with chronic pain is like...Procrastinating and putting off things. AKA posting this post that I wrote back in January!

Spending the festive period on your own because sometimes, even being surrounded by people who love you; can be too much.

Having a kettle by your bed so that you don't have to go down 3 flights of stairs to make a hot water bottle.

Grieving for the life you once had, before you were constantly in pain.

Cancelling date after date because you fear they'll run a mile once they find out you're in agony, every day.

Feeling like you let EVERYONE down, all the time.

Postponing and cancelling on people until they stop asking.

Lying in bed, supposedly the most comfortable place on Earth and it might as well be a bed of nails.

Wondering if your friends are sick of you being the "special" one. The one who needs the comfy bed when you go away, the one who can't attend 50% of your get-togethers.

When you know a hot bath or shower would help relieve your pain, but getting up, undressing & turning the taps on/off is too much.

Feeling like you're triple the age you really are.

Being surrounded by piles of washing because doing the laundry is far too much.

Wondering if you'll go to the toilet on yourself because you can't get to the toilet quick enough.

Feeling like no one will ever want to be with you.

Apologising/forgiving, even when you know you're not in the wrong because being in an argument for any longer; will just cause you too much anxiety & even more pain.

Spending days and days in loungewear.

Being jealous of your peers and how much they achieve daily, weekly, monthly.

Feeling like you're a let down to your family because all you do is complain and whine to them.

Being in so much pain, you stutter because you can't get your words out properly.

Not doing your hair because you can't face lifting your arms for that long.

Wondering if you'll ever have a day when you wake & your first thought isn't pain.

Cancelling something you have wanted to do for weeks.

Feeling like you hate everyone, even the people you love.

Watching one channel on television for hours on end because the remote control is too far out of reach.

Being unable to carry your own suitcase

Leaving your DSLR camera at home every day because it's too heavy for you to carry.

Ordering uber eats 3X a day because you can't face cooking/preparing anything.

Taking taxis everywhere you go because travelling by public transport/walking is too much.

Being skint because all you do is take taxis & order take away food.

Having scars on your back, stomach and legs from years and years of hot water bottle burns.

Wondering every week if your management is going to let you go because you're always sick & you're not achieving enough.

Having no space in your brain for anything else other than pain.

Not being able to screw the cap off some medicine, because you have no grip.

Taking a hot water bottle abroad even though it's 30degrees +.

Planning out every single journey so that you know every single minute detail.

Turning down travel opportunities because the thought of the travel/flight is too much.

Worrying so much about all of these things, that it gives you IBS for over 9 years.

Thinking everyone just thinks you're lazy.

Pretending you're ok when really you'd prefer to not be alive.

Lying awake, even when you are shattered but your central nervous system is so hyped; it won't let you go to sleep.

Being in so much pain, you throw up.

Wanting to achieve everything & feeling like you achieve nothing.

Looking at your friend's lives and being so jealous you wish something shit would happen to them, just for once.

Knowing you'll probably never have kids because even babysitting relatives for a few hours, leaves you in agony.

Keeping all of this to yourself because it's easier than telling someone.

Having no short-term memory because your brain is occupied by pain signals.

Having no sex drive because all of the above, just isn't very sexy now, is it?

Having a high sex drive but even just lying down in bed hurts.

Telling everyone you're "fine" when really, you're far from it.

Losing countless friends because you can't keep up with them all & they expect too much of you; so it's easier just to let the relationship slide.

Not texting anyone back because then you have to face up to why you've been ignoring their texts.

Wondering what it feels like to have a pain free hug from someone.

Wanting to exercise but being unable to.

Sitting on the tube because you're in agony but giving your seat up because no one can see you're in pain & you're worried about looking unkind/unsympathetic to somebody else in need.

Using a hot water bottle minus the fabric cover because the burning sensation/pain distracts you from your chronic pain.

Being in such a good mood, you want to cry because you know this feeling isn't going to last.

Being sick of your own thoughts.

How I cope

As I mentioned above, there are good days. There are days where the pain is manageable and I don't let it control me. It's very, very hard though. It is something that I am still trying to get to grips with and I do wonder if things will ever get better.

Lots of people private message me about how I cope with my Fibromyalgia and the one thing I constantly say is - pace yourself. You need to realise what your limitations are and what it is that will trigger your symptoms. For me, I know that stress, cold weather, travelling and walking/standing for a long time & dancing on a night out are my worst triggers - there are tonnes more, however. I then make sure that I plan as much as I can if I know I am going to do any of those things. I try to alleviate the stress of situations where possible by thinking about how every stage will affect me. If I am travelling for instance - I plan my journey, I pre-order my cabs, I take a pillow/hot water bottle with me and I make sure I carry as little as possible... the list goes on.

~ Seize the day ~

When I am having one of my good days - I really have to make the most of it. I have to seize the day! Shooting content with my photographer is an example of this. I have been struggling for a good few weeks since London Fashion Week and have been wanting to shoot these denim jeggings from Matalan since receiving them back in February! Sadly it's taken longer than I wanted - but I just had to listen to my body and wait it out. Finally, I felt strong enough last week, slugged through the snow and shot this snuggling, comfy, classic outfit.

Some days I like to dress in a striking, edgy way and some days I like to be comfortable, timeless and relatable. Denim and a Breton jumper is the perfect combination for that 'done but not too done' look, in my opinion.

There is so much I could say about how I cope with my chronic pain, but I think I will leave that for another more comprehensive post. Would this be of interest to any of you? I could write about my Fibromyalgia diagnosis, treatments I have had, drugs I have tried, how I cope mentally/physically etc...Please comment below or message me on socials if this sort of post would be of interest.

I have chronic pain too (from endometriosis) and can totally relate to all of this. I was also welded to my hot water bottle for years, but then discovered electric heat pads - have you tried them? What's amazing is they stay hot forever, and if you wake up in the middle of the night in pain you can just roll over and plug them in. I'm using mine right now!

Hey, this was a very hard post to read. Just because I could have written this myself if I was better with words anyway. I have fibromyalgia and a form of arthritis (was imflammatory, then rheumatoid, then psyoretic, docs can’t make up their minds with fibro mimicking everything!) along with some other stuff, and basically I hurt. I hurt like duck all the time. I can’t remember a time without pain now, as I’ve been like this for at least 15 years out of my 31. Dating, absolute minefield, I make no mention of my disabilities on my profile, I don’t show my walking stick in photos, but, when conversations have progressed to whatsapp/possible phone calls and plan to meet up-I then do mention it. 75% then find reasons to not meet. Or they no longer want to date, just sleep with me... or when I have to put off a date they disappear. Or I ghost them, I don’t mean to, but I just can’t deal with explaining the problems with me when it hurts to breathe and blink, let alone function as a working human being. I do manage to work full time, this is horrific on my body but I can’t survice without working as they took my benefits away a while ago and I don’t have family to help me out so I’m always on my own. I have a few friends, but they’re very fair weather and they don’t seem to be there for me like I always am for them. But I can’t expevt them to understand as I don’t talk about this part of me, but I wish I could explain it. I know you don’t know me from Adam, but should you ever want someone to talk to, I’m awesome at chilling out and what appears to the world as doing nothing-but I’m actually taking the time to listen to my body. Sending loads of gentle hugs, Zoe x

Thank you for taking the time to read and to also send me a comment. I really appreciate that! Have you thought about being 100% up front on your dating profiles? I used to do the same as you but then when you move forward you have to bring it up and you arent sure if theyre going to take it well/ghost you etc BUT if you have it all out on the table, there is no room for second guessing. You know that if the guy/girl has taken the time to read your profile and still message you; you know theyre a goodun.I think you should definitly put a pic up with your walking stick. If that is how you are - show it and dont be embarrassed babes. There is NOTHING wrong with you and the fact you need a stick sometimes. It's their loss when they ghjost you etc because you sound like a very lovely lady tbh!

Have you thought about showing your friends a post like this. That way you can you show them a real insight into what its like for people like us and all that we go through just to survive one day?

This post really hit a nerve with me. I found myself reading along and thinking Yep,Yep,yep...I feel the exact same way. Thank you for speaking out about your struggle to deal with your chronic pain. It's comforting to know I'm not alone in my struggle. Ive had nearly 7 years of chronic back pain involving 2 major surgeries on my back and I'm currently signed off work and feeling like a complete failure. I would love to hear more about how you cope etc. You're a wonderful beautiful woman and it sucks we have to go through this but just know you're never alone in feeling like you do. Lots of love xx

Thank you for taking the time to read my post and also send me a lovely message. I really appreciate it! I am sorry to hear you have such a struggle as well, most of my pain/problem is with my back so I can really appreciate how hard things must be for you, especially after surgeries!! I will defo write another post about how I cope etc. Thanks again xx

Adore you! I don't struggle with chronic pain, but my mother does. This post helped me to better understand her. I would definitely read future posts for that reason. Anything that I can learn to be understanding and sympathetic to her is a positive for me. Sending you all my positive energy for today being a good day. xoxo

Yep I definitely understand all of your long list & have another 25 comments I could add to it with having 4 autoimmune diseases, Crohn’s diease, fibromyalgia & another 4 illnesses thrown in the mix! I see 9 different specialist Doctors in 3 different hospitals so just attending them knackers me out & I only get to go out & do a leisure activity roughly once every 10 weeks. Tbh I think we protect other people too much because we don’t want to feel like a sad moaning boring friend or relative but if we don’t tell people then we are never going to be heard or understood. Thankfully I have 24 hour care, which is a blessing as I couldn’t cope with all this & be lonely. Thank you for using your voice.

Gosh I am so sorry to see how much you struggle with! You must be such a fighter babe - huge amounts of love to you! You are right, we tend to bottle it in as we feel like we are a burden on people but its so important we share our thoughts and worries isnt it. I am glad you have care and so glad to hear you are not lonely.I feel a weight off my shoulders now Ive finally posted this post actually. It's good to be able to show my management and family/friends etc what really goes on inside my brain! xx

Thanks for taking the time to leave a comment and do write again soon x x

I don't have to deal with chronic pain, but I do deal with mental illness. I tend to be very open about it though. I'm the person who can't keep things to themselves to save their lives. I wish I had the words to show you how much it saddens me that you have to deal with Chronic pain. You are so brave, and I wish I could hug you right now.

What a lovely, lovely message. Thank you so much for reaching out and commenting here. I am so sorry to hear you also struggle badly with your MH. Its so brilliant that you are open and share things - we need more people like you. Thank you so much for your kindness and well wishes xx

Im glad you wrote this for many reasons inc the hope that it helps your friends and family understand and appreciate you more but also because it has made me realise I need to be kinder to myself and to worry less about what I think people think about me. I have chronic pain because of my back, joints and pcos and have done for over half my life yet Ipush myself to the brink every day. I need to slow down! Thank you Dani and big, gentle hugs to you. Much love xx

YES! you most certainly need to worry less about what people think of you - you are so right!! We are different from those without chronic pain in the fact that we cant push ourselves to our limits because itll ruin us for days after. It's all about pacing ourselves and learning when our tipping point is. Have you read up on the Spoon Theory? Thank you so much for your messsage and do look out for my next post on how i cope etc. xxx

Thank you for writing this. This is my life and it scares me. I'm 35 a mum to 3 and it's been an awful time because of what you wrote. I'm just trying to change my life around at mo.i started a new Instagram if you ever wanted to follow. X_myownworstenemy_x or my private one is laurafibrofighter. But my new one is real words to try make others understand and to make myself try change. Thanks again for sharing I'll be asking my friends and family to read and say this is my life!!